Archive for July 2011

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

Yesterday, my husband talked to someone who said “Oh, and tell <our daughter> hi from us!”

Last week, someone said “And how’s <our daughter> doing? And xxx and xxx?” (XXX would be our older kids.)

Family isn’t immune — “Can <our daughter> come to the beach with us?”

We answer their sentence, then say “And BB is doing great…” I sometimes add “Thanks for asking!”

Apparently it’s not an acceptable answer — I’m supposed to just ignore the fact that they ignore him. My “Thanks for asking” comment is usually met with silence.

It’s like autism makes my son the invisible boy until we bring him up.

I realize that sometimes people don’t know what to say. You want to be careful not to say the wrong thing, so you opt not to say anything. But if you recognize yourself as doing this — I think we all have situations where we are at a loss for words — at least say “How’s <BB> doing?” You don’t have to specify, you just need to ask how he/she is doing. It means everything to us when our child is seen as just as good as everyone else’s child. Because he is. We all like to think our kids are the cutest, the sweetest, the smartest, the best..problem is, we all think that way, and a smart parent will realize that.

Autism doesn’t mean my son is dumb. In fact, quite the contrary, he’s incredibly gifted and working at an academic level years beyond his age.

Autism doesn’t mean my son is unaware of what’s going on around him. He’s surprisingly adept at listening to conversations while still focusing on writing HTML for a game he’s designing. He can hear a song once, while playing a game, and repeat it note for note, word for word, weeks later, without ever hearing it again.

Autism doesn’t mean my son is unable to do something outside of his scope of interest. Just like any other child, he’s got a lot of abilities but chooses what he wants to do. In fact, he’s probably more in tune with his interests and abilities than people without autism.

Autism doesn’t affect his hearing. He can still hear you when you let your child get away with calling him a name or when you whisper “It’s okay, go do your thing, BB will be fine on his own.” Again.

Autism doesn’t render him incapable of comprehending your speech. He knows what your words mean. He knows what it means when you say “I’m not going to keep coming to visit you if you don’t hug me.”

(Something I want to point out: that won’t make BB or any other child with autism want to hug you.)

Just because you don’t understand a child with autism or you don’t want to understand a child with autism doesn’t give you the right to be mean. Because that’s what it is: being mean. Ignoring a child for behavior he can’t control is like refusing to help push a wheelchair uphill when the person is a paraplegic, and who would do that?

Next time you deal with a family with a child with autism, ask about the child. Even if you have to fake it, ask. And if you have to fake it, maybe it’s time to re-examine why you feel that way — why does it bug you so much to acknowledge that this family is dealing with a child with special needs? Do you have to agree with everything someone does to like them? No, so why is a child with autism-related behaviors any different? Maybe it’s time to stop letting your personal feelings get in the way and just be the friend, the Godmother, the cousin, the aunt, the grandfather. That means loving the child for whomever he is and overlooking the rest, even if you don’t agree with the way the mom and dad parent him. Love him and respect him, just like you would any other child.

It’s 8:19am. I haven’t received a call yet. I know it’s early, but I have hopes that his first day is problem-free. I dropped him off at 7:14, fifteen minutes before he has to be in there, but early enough for breakfast if he wants an extra snack before the day starts. He ate his normal homemade chocolate chip waffle before we left and usually eats the breakfast there at school too (which they deliver to every class for every student) but said he wasn’t hungry today for school breakfast, so I think there were some nerves.

BB likes to wear Mardi Gras beads. Everywhere. A few around his neck, a couple around his wrists, and sometimes, even around his ankles. (Two weeks ago at his ped appointment, another child saw him and laughed out loud. Mom looked, smiled, but said nothing to her boy who was obviously laughing at another child. Nice, eh?) Today he wore them again, minus the ones on his ankles. I hope his teachers leave him be and he’s not teased. He is his own person, and I love that he has his own style and is comfortable with himself; I just wish others were comfortable with his differences and learn to handle their responses better. I see the problem as being with them, not BB, and I wish teachers taught students more frequently to be glad for the variety in people, and to appreciate those unique qualities rather than mock them.

I have high hopes things will go well. He is in the gifted program, and that means a lot of changing classrooms. I took him in last week to see those rooms that were new, so he could transition better, but I also don’t know that the teachers were aware that he even had an IEP and that I was there solely to talk to him about him in detail, not so we could not have to attend Open House. (I hate Open Houses. There, I said it. Every parent wants to talk to the teacher, you all walk around the crowded room in tiny steps and the parents who know each other stand and talk, which means that it’s one more opportunity for us to be ignored as we know no one, and those that we do know don’t really have much of an interest in doing more — small town life is not easy to get involved with if you don’t have active family here or weren’t raised here.) The main reason we went to meet them was for him to have uninterrupted time to get to know his teacher(s) a bit, to scope out his location, to make a seat request if we weren’t happy with the existing one (because of his eyes and because of his space issues, and because some teachers find that isolating him makes their life easier) and to advise them of a few things that would make his and their life easier. So much for that, the ten minutes we got allowed basically no time for that, and didn’t even confirm for us that they’d seen he even has an IEP. For all we know, they aren’t even aware he has autism. The asst. principal used to handle this type of thing, as well as classroom assignment, but he was moved. Not sure if any ball was dropped, but time will tell. Until then, I don’t want to worry.

Yesterday, he decompressed from being gone all day Saturday at the birthday party. He had SO much fun and wasn’t a problem at all, and we’re thrilled. Onwards and upwards, right?

Two weeks ago, I took my son in for his yearly well-child checkup. (I still want to keep referring to it as a well-baby check-up. I am in denial that he’s now ten.) I got the dreaded news that he failed his eye test. Actually, I figured it out as he was attempting to guess what letters he was seeing and my jaw kept dropping further and further as I saw how bad it was. How did I not notice this sooner?

Fast forward to yesterday, when we went to pick up his glasses. He’s so.darn.cute. He chose his own glasses, and I was super-thankful he chose a pair that was not far out of the range of what our eye insurance covered. (Does it ever really cover frames 100%? Everywhere we go, the frames are always priced outside of what the insurance coverage is.) For his first pair, I didn’t want to break the bank in case he broke the frames. It’s a habit to get into, being careful with them, removing them when you need to, remembering where you put them, and putting them in the case. Cleaning, all that stuff. I was concerned but he has, like he usually does with challenges, risen to the occasion. He loves his glasses, says life is now in HD, and is thrilled that he can see nature so clearly. That’s my barnacle boy.

I took a business trip this week, and was away for two days. I missed him all the time, but let’s face it, a break is a good thing at times, for all moms and all kids. (And if you say it’s not…I think you’re not being honest or you’ve never had a break and relished the uninterrupted time to ponder the little things in life that slide by in the rush that is parenting. Trust me on this, as a mom of four, time away is good for you AND for them.) I shared photos on my FB page, and was glad when one inspired a friend of many years ago to respond because I’d traveled to a place she’s always wanted to go.

I didn’t know it, but my friend works online now and is enjoying being able to work at home as opposed to heading to an office each day. For years, she tells me now, she didn’t realize that working from home was/is a job like any other, with supervisors to report to, accountability, and deadlines. Now though? She gets it in spades. She was a journalist for a local paper when I met her, and now manages a small staff of writers for an online publication, and while she loves it, she’s found she’s struggling with parts of it as she adapts. She had to miss a child’s performance. Having to say “Not now, I’m working” makes her feel selfish. Then she was asked to release a writer, and it was her first time. I virtually held her hand as she dealt with the guilt and the fallout in the last three days, and felt for her. Been there, done that, and it’s awful. Of course, the writer was unhappy and blamed her, though like in any company, my friend didn’t make this decision on her own and was just the messenger. It’s not a fun place to be, because she can’t really do anything about it nor say anything as she is contractually obligated to direct them as she’s been told to direct them, and to zip her lip otherwise — she of course can’t even tell me details — and she’s still talking about how she hates to be the bad guy. I felt her pain, because when you aren’t seen in person, it’s easy to be misunderstood when in reality, you’re doing your job, even the hard parts no one likes. It’s something learned in our years dealing with autism. I may not like what I hear in an IEP or from a teacher, but people are usually doing what they’re told so getting ticked at them, and then holding onto that anger and bitterness takes away energy from focusing on your child; I tried to remind her of this while giving her the much-needed hug, so she hopefully was able to take it for what it was, understand the writer’s feelings, right or wrong, and move on while hoping the writer did too. (If you’re wondering how that ended up, the writer blasted her on FB and now wonders why she’s having a hard time getting another gig. It’s sad all the way around. So much negativity, sort of like in high school when someone steals your boyfriend and you vow to never talk to them again, and you tell others bad stuff about them, true or not, and then you grow up and realize that life’s not all black and white and maybe you weren’t a good girlfriend anyway.)

I think we’ve been able to upgrade our friendship based on a new shared thing in our lives: working from home while managing an autistic child. See, she too has an autistic son, and while he’s a couple of years younger than BB, we met when our kids were in a social event but had little else in common. Now we can support each other through not only autism-related issues, but the different world that you live in when you work at home full-time and don’t have the same type of day-to-day life you do when you’re in an office and I don’t have any other physically-close friends who work at home. We wouldn’t have met without the autism connection, and while I’m sure both of us would rather not have that, the reality is that we do and because of it, we’ve been able to make new friendships that add so much more to our lives in other ways. It hasn’t been long since we reconnected, but I think it’s going to be a lifelong relationship. Life works in mysterious ways.

Autism may not feel like it initially, or even years later, but it’s expanded my eyesight. I see much more than I used to. My life is expanded, not limited. I lost friends during the early years of diagnosis, but I have gained many more as time goes on. My son’s eyesight is expanding now too, and we all see clearer.

Maybe I’ve been dealing with autism for a long time, or maybe I’m just hanging with the wrong people, but there are days I want to block myself from anything and everything that is autism other than something related directly to my son. Ever feel that way?

What inspired my rant is when a parent I have known forever has an adopted son with autism, and he’s not enjoying ESY. (Extended-school year.) I don’t blame him, is what comes to mind. If he’s that unhappy and throwing tantrums each day, grabbing onto mom as he goes out the door and there’s no real ‘school’ during the summer, maybe staying home with mom is more beneficial. But I don’t say this. I can’t say this to this particular friend, because she is mired so deep in her child’s mild autism that she doesn’t realize that each and every conversation is about her son. His tantrums. His sensory issues with bright lights. His hate for clothing tags and his dislike for food that is square. His obsession with neatening up all the books on her office shelf every day. You know, the same types of things most of us deal with every day, so I can relate. But what I can’t relate to is her incessant negativity. I can’t tell you the last time I’ve heard anything positive about her beautiful red-headed green-eyed boy who, like BB, has a vocabulary that stumps some adults and who can tell you each and every thing about military aircraft. I don’t hear about how he just had photos accepted into a gallery in their town (as dad shared his photos one day with the owner, so his son is the youngest artist on display there ever!) or how his school teacher is cooperative and easy to work with, or how he can dive off the diving board into the pool barely making a splash. If you talked to her for a long while, chances are you wouldn’t hear any of the above unless you talked to her husband too, as I did to learn all the above, but you’d know how he’s still not potty-trained completely and how he doesn’t sleep at night. Oh, and he has an obsession with flicking his nose. (Not picking, flicking it in this odd way that’s completely eccentrically cute though I don’t know how his nose isn’t sore! Thing is, she sees it as one more thing she has to fix, and while I relate, come on, give the kid a break already.)

He’s her son, not mine. I don’t know what it’s like in her house 24/7, and neither of us know what he dealt with the first 18 months of his life before he was hers, so I am here for support but one day, I may just either bite the tip of my tongue off or lose it and ask what good thing he did today since I don’t want to have to call her husband to find out. (And in case you’re worried, she isn’t on the internet so she won’t find my bloggy story. In this day and age, it amazes me that I know three people who still really don’t participate online in any way. No email, no blogging, not even internet research or online bill paying! How does one do that?)

Next time BB’s having a bad day, I know I’ll likely have a lot of venting to do or I’ll share my displeasure in some way, but if I make an entry where I say nothing good about BB, let me know. My son is way more than autism. He’s a musical savant. He can do math far better than me. He knows HTML and designs video games. He’s drawn up a business plan and knows what he wants to be as an adult and how many kids he wants. He makes me laugh with his outrageous questions, and has far more wisdom than many of my peers, and even more than I have some days. When you talk with me, you probably won’t hear about autism unless you bring it up. He’s BB, and BB just happens to have autism. He also happens to be the cutest, most adorable, and most amazing kid I’ve ever met, and that’s what I focus on every single day. Even on the rough days, when I’m exhausted after he goes to sleep, I watch him and am thankful for what a gift he is.

Barnacle Boy (who is still my Barnacle Boy, btw, even at ten — he wants to see me first thing in the morning, cuddle, be near me and runs up and kisses/hugs me sporadically) is obsessed with computer games. He writes code, scripts games and is planning on being a computer hacker for the government someday so he can help catch the bad guys. Computers are his thing, and he definitely has the aptitude..and the attitude, as he’s not so much for social skills in a lot of ways and he’s got a lot of interest in being self-employed as well as the creativity and ingenuity to invent amazing things. He’s fascinating to listen to, can have a wonderful (one-sided) conversation and he’s got such a sense of humor interlaced with the vocabulary of a well-bred adult. He’s also very routine-oriented and likes things a certain way, which makes showing our house as we sell very…interesting. But he’s going with the flow.

Anyway, BB has his routines, and they are to play computer games much of the day during the summer. With the heat index regularly over 100, it’s not horrible, because he can’t really play outside for more than a few minutes at a time, other than swimming, and he does a lot of that. (But we even have to be careful there, he had another bout of swimmer’s ear last month.) As summer goes on, he’s beating a lot of the games and tiring of some of the things the newer players do. I try to teach him that those players could be much younger than him, and that not everyone has the same level of skill but that’s a hard thing to teach. So what do I hear a lot?

Every mom’s nightmare: “Mom, I’m bored!”

I can do like I do with the rest of the kids and threaten him with chores, but that buys me only a couple of minutes. Other kids scatter like roaches in the light, but he stops for a couple of minutes, thinks, and then again says he’s bored. I have pulled out movies, made cookie dough for him to shape, bought art supplies, you name it…so what did I resort to today? Buying more online game subscriptions. Cancelling two others. It’s a revolving door. So I’m set until school starts in a couple of weeks, right? Ha. It took four hours before I heard “Sigh. I’m going to sign off for a bit, I’m tired of this game.”

Out comes $8 and his sister to take him to McD’s for shakes. Forty-five minutes, and $7.40 later, they are home. Shouldn’t $7.40 buy more than 45 minutes of non-boredom??

I am trying to get him into new things, but that’s a lot harder than it sounds. He’s got the world’s greatest treehouse, with a new sling chair installed, but it’s too hot. He’s got this awesome rip-rider..too hot. Wii? Played all the games. Board games? No, only Stratego..and then he kicks my butt. Every.Single.Time.

I love having him home for summer and I don’t really think it’s long enough, but maybe year-round school suits his needs. We’ve already found out his teacher, and next week, I need to meet with her so he can get a chance to be familiar with his class before the first day, and I can be sure she’s familiar with BB and his needs. It’s in the IEP, but you know how that goes.

Stay out of the heat and if you are below 75 when you go to sleep, hush…

Recently, I had a discussion with someone about how my advocacy style was so different from hers. She’s gung-ho about telling everyone she meets about autism, blogs about it frequently and does it without the protection of anonymity, and most conversations end up including autism to some extent. Me, on the other hand, I don’t mention it so much. Not only does my husband not care for it when I tell a random stranger, even for the purposes of perhaps helping one more person understand our kids, but I am tired of getting the ‘huh? uhm, yeah, okay’ response. I blog with anonymity, referring to my beautiful son as Barnacle Boy, a childhood nickname due to his attachment to me (still) and don’t want him ever reading this when he grows up. I also don’t want the people that I run into to feel like they aren’t going to be open with me for fear of showing up in my blog someday. (I know people who’ve found themselves the subject of a negative blog entry or comment, and being the social outcasts we autism moms already frequently are, why up the number of people who don’t know how to talk to us?) I also try to not include autism in every conversation — let’s face it, after almost seven years of a diagnosis, my friends know what life is like, they understand when I’ve had a bad day, and I only need a few words to convey what’s really going on. Saying “school called again” with a sigh is enough. Or just saying “it’s been a long day” suffices. They get it.

I think a lot of it has to do with the fact I’m not immersed in treatment 24/7 right now. I used to be. I had to be. My BB would bang his head on the floor in pain and/or anger and frustration, and he’d pull out his eyelashes. He’d bite himself, and us, tags and normal clothing textures made it hard for him to get dressed — and stay that way — and crying babies would throw him into a tailspin. His communication skills were off, he had no eye-contact, and the random stranger touch freaked him out. And then there’s the running away, the sensory issues, the other behavioral issues, and the social skill deficits. In many, many ways, there’s been vast improvement. Most people would look at him now and wonder why we’re so worried. But those would be people who didn’t see where we’ve been. They didn’t see us with bitemarks and bags around our eyes from lack of sleep or worry. They didn’t have to sit with us through a blood test to check his blood sugar level that was too high during last month’s physical (which was a wreck itself, because he hates being touched by strangers and of course, the doctor wants him to be almost completely undressed and that doesn’t fly with BB) nor go with us to the dentist, which was only two months ago that we had to switch because he bit the guy and caused him to novocaine his own hand.

But we know. And that’s why I continue to advocate, but in my own way. I focus on educating those that have direct interaction with BB, or those that ask me because they want to know more or know another family dealing with autism. I still throw out info to the random stranger sporadically, but I figure that unless there’s a reason, I don’t need to necessarily give them our story when I don’t know what they’re dealing with at home. Years ago, a woman felt the need to chastise me in public for telling my kids, while I was writing a check in a crowded store, to quiet down. “You are so blessed to have them, you should remember that.” Uhm, okay? “Yes, I am blessed, I know that because of fertility issues that required a lot of fight to get my family size to where it is today, which isn’t your business anymore than telling me to not tell them to quiet down. Thanks and have a nice day!” Moral of that story? You never know what that other person already has dealt with, or is dealing with, so pick and choose who you give the autism story to. My feelings are that advocacy is most successful when used judiciously. Sometimes we are advocating for ourselves — it makes us feel better, but just makes the other person feel worse, and it is no longer advocacy.

My goal is to advocate for my son in a way that helps him, and the autism population at large, but without constant intrusion or sounding like a broken record. I have three other children, a full-time job, and a husband. I only have so much time and energy to go around, and for my sanity, I need to move on to other topics. My friends need me to move onto other topics. They need my listening ear, and to do that properly, I need to be able to focus on them; the time will come when I need them, again, and the friendships I’ve kept while on this autism rollercoaster are more valuable to me than I can possibly ever convey to them. The few strong solid friends who I will call friends forever are worth more to me than the many that I lost because they couldn’t understand why I couldn’t get through a five-minute phonecall without hearing BB cry or get upset in the background; they couldn’t deal with my being unable to go out to their house without BB having a meltdown or they’d get freaked out when he’d hide under a table; they couldn’t risk their child having to witness mine crying because he was again left out of a game or because I wouldn’t let the other kids call him names; mainly, they refused to understand autism and my son’s odd professorial-type of vocabulary fooled them into thinking he was just a brat and we were bad parents, with the fact that we had three other children, all older, who weren’t ‘brats.’ The list goes on, and there are times I wish I could really give those people a trip through time to show them what life was like, what we’ve been through, and most of all, what my amazing brilliant son has gone through, and how far he has come.

Our children are the epitomy of courage. They don’t give up. They are examples and should be seen as the brave people they are and that’s where I want to focus my advocacy efforts for now. I don’t want to raise money to go in some administrator’s pocket or tell me what gene my son has that’s not right, nor tell me some other reason why it’s my fault he has autism. Sure, I want to know the reason so we can prevent other families from going through this, but I also think money rarely goes to the families who need it the most — those dealing with it now. One-income, two-income, ‘rich,’ poor, it doesn’t matter. It’s too hard to get help, and as a result, we learn to do it ourselves, and that’s advocating for our child in a way no one else can do anyway. So even when we’re not publicly advocating, we’re privately advocating, and that’s enough for me.